About my son

Nathan was born in late 2005. He was (and still is) a very happy little guy, but as the months rolled by it became apparent that things just weren't completely right with how he was developing.

At around 10 months old, it was recommended that we have an MRI performed to see if there was something we should be concerned about. A short time later he was officially diagnosed with having PMG. It was still unknown what this would mean, and we would only find out his symptoms as he grew and developed.

For Nathan, take the list of 'wide spectrum of other problems' on the What is PMG page and check all-of-the-above. Has it been a challenge? Yes. Will it continue to be a challenge? Yes. Do we feel sorry for him or ourselves? No. Life has presented many challenges for us, and this is just one of them.

Shortly after the diagnosis came his first seating clinic. This is a meeting with a physical medicine doctor, physical therapist, occupational therapist, and some others to determine how best to situate our son and assist with his development. I was away for work and couldn't be there to help my wife, who was still in shock, and trying to be strong for the both of us.

The doctor's response was disappointing to say the least. She told us to "Just put him in a wheelchair and enjoy him. He seems to be happy." No information on trying to help him develop, very little hope that he would do anything but smile. Oh, and telling us that, "smiling is just a reflex, not a true indicator that he's really enjoying anything."

Seeking more answers (really any answers as this doc seemed to give us nothing) we sought out one of the two U.S. specialists in PMG. With the number of cases of PMG and only two specialists, the waitlist (especially an initial visit/evaluation) was 9 months long.

In May 2008 (over Mother's Day weekend), we trekked to Chicago to see Dr. Willam Dobyns. Once there, we waited another hour and a half to see him, but it was worth the wait. He talked to us for almost two hours, very frankly about how Nathan's brain is effected and what's realistic and what is really a long-shot. At least now we had hope, and something to work toward.

My son is a fighter, out to prove others wrong. His work ethic and determination are something I learn from, and try to live up to, every day. Sure, there are good days and bad. Every now and again we still see that initial doctor in the halls of Children's. Someday we hope to watch Nathan stand up, and walk right past her and smile, knowing that day it will definately mean something. From what he's been doing the last several months, we definitely think that's possible.

Whenever you're feeling down, think that God has given up on you, I encourage you to come back to this site, look at the videos, and know with faith, hope, prayers and a lot of hard work, there's always a possibility for good things to happen.